View Full Version : How to start a face-to-face support group??

08-16-2010, 09:41 PM
Hi all
I'm not sure how many of you attend or maybe even operate a face-to-face support group but I was thinking of starting one here in Canberra as I haven't found one. I want to make it Wegeners-centric but might struggle a bit with numbers :unsure:

Anyway, what I want to know is how you would start and then manage a face-to-face group if you could. I was thinking initially of meeting monthly and seeing how it goes from there. Obviously we can't just sit there and look at each other so I'd need to think of something interactive (yet done sitting down) for the group to do too. Perhaps just sitting and talking about our experiences would be a good first step. I'd also need to get somewhere for the group to meet, perhaps provide some kind of food/drink as well especially for the pred-people :w00t:

As you can see, still very much in the planning stages. What would you want from a face-to-face support group? Any ideas no matter how wild will be greatfully accepted.

08-16-2010, 11:26 PM
I think that is great Andrew, if I live there I would go to your support group.
Hope it works out for you.

08-17-2010, 12:13 AM
Elephant would expect nothing less than triple chocolats muffins Andrew !!!!!!! i would go to your group too
wish there vwas one near me DEEx

08-17-2010, 12:53 AM
Andrew -- I think that most of the support groups here in the states, at least those that meet under the auspices of the VF, include all the vasculides for a start -- so that's 15 diseases rather than one, which increases the numbers somewhat (although WG will always be the largest of the 15). I know that it is a continual struggle for them to get people out on a monthly basis -- chapter leaders told me about months where no one comes, and at the most, in some of the larger areas, they get 5 to 10 people (this includes caregivers).

For years, my surgeon, Lebovics, had the local chapter running their meetings out of his office, which were probably well attended because there was always a doc there, and there are always weggies with ENT problems! However, that chapter leader went into remission, had kids, moved (a good news story) and the chapter died and was reborn far into Central NJ, which is enough of a hike for me that I wouldn't be interested in a face-to-face there.

I suspect that the people who need or would choose a face-to-face group over what we have here would be a different breed and I'm not sure of what they might find appealing.

08-17-2010, 01:18 AM
That's a great idea Andrew. I wish I were just a wee bit closer so I could come!

You might consider breaking the meetings into sections like General sharing (each person gives a brief update), Last session leftovers (eg questions that were going to be answered) and maybe a Discussion topic (eg how to talk to docs). It's a good idea to manage the time for the General sharing part, since some people might talk longer than others.

08-17-2010, 07:56 AM
Thanks guys! Yes, including everyone is a good idea especially in this town. I think starting it in the warmer months might be a good idea too. I would also need to advertise so I'll talk to my doc about that and maybe the Vasculitis Foundation as well. Ya never know who's looking at their website, could be someone from accross the road.

09-14-2010, 04:13 PM
Hi Andrew, A fellow Weggie and I (which I met at Long Beach) are working at starting a group for Vancouver Island. It will be on October 16th at 2 pm in Nanaimo. If anyone is interested in attending email [email protected] and I will give details on where to attend. We are hoping to get people from all over Vancouver Island, well 3 or 4 anyway. We sprung with some of our own money for an ad in the local papers and are hoping to get some freebie follow ups. We also posted on some free sites for activities and are putting up posters in appropriate medical places. I asked the lab, it I could put one up, will find out tomorrow when i go. We are planning on having a general warm up by asking people about themselves ie names, what their interest is in the group and what they are hoping to see happen in the group. We will offer some of the printed information we picked up at the Symposium and got from the vascultis foundation. We will encourage open discussion, after that we will have coffee/tea and juice, and likely baked goodies (mine) and give time for lots of free interaction. At the end i will ask people are they interested in doing this again. I am thinking about once every three months because people will do some traveling, so its a committment. I will ask what they would like to have happen at these meetings? Anyway this is the plan, plans tend to take on a life of their own, so I will let you know after the fact. So far we are a group of 4, my co planner and an elderly couple. The lady who called said she was so excited about the ad, she couldn't sleep she has been so alone with her ilness. She doesn't do internet. Hopefulyl more to come. We still have a month and the ad has just recently gone out. I'll let you know how our effort has gone. The Vascultitis Foundation is putting out some information for me as well. If there's anyone you would like to get the message to, please feel free to do that.

09-14-2010, 08:53 PM
That is great you are starting this Germaine! Hope it is a success!

09-14-2010, 11:40 PM
So happy for that woman who's felt all alone! Thanks for starting the group, Germaine. :smile1:

01-20-2012, 10:10 AM
Hi, I am wondering if Germaine you still have your group going and if you have any advice for me as we are starting one, our first meeting is February 25th, 2012.

I am also wondering Andew if you did start a group?

I know this a very old thread so maybe you won't see it but ....not sure how that works.

01-20-2012, 11:32 AM
Anyway, what I want to know is how you would start and then manage a face-to-face group if you could.
As you can see, still very much in the planning stages. What would you want from a face-to-face support group? Any ideas no matter how wild will be greatfully accepted.

I don't know how big your group will be, and you probably won't know either. You could put your phone number on any advertising you do so you would have a rough number, but you still may or may not have walk ins. Do you have any meeting halls? Church basements, senior citizen center? Someplace neutral. I would set chairs in a circle and I would set some really basic ground rules. What is said here stays here, everyone must be respectful etc. Then I would start going around the circle just saying name and when they were diagnosed with Wegner's. Then I would go back around and ask where they were and what their initial feeling was when they found out. After that I think I would ask what topics the group would like to discuss and/or learn about. For example, How to manage work. How to help family cope with dx. Where to go for treatment and how to talk to doctors etc. etc. Then each meeting could have a theme and if you didn't want to provide the information for each session you could divy it up amongst the group. And of course have double chocolate muffins in case elephant finds a way to get there and maybe some cheese cake for me (LOL). Good luck, I think you are an amazing healer, you started this forum and now you are expanding to face to face.